“Try not to worry,” she said. Her phone rang. She looked sad as she answered the call.
I knew I couldn’t sit in the waiting room for the next ninety minutes, so I decided to go home. On my way, without thinking about it, I pulled into a gas station and bought a pack of cigarettes. I hadn’t been a regular smoker for twenty years. At home, I sat in our backyard and smoked one cigarette after another. I was numb and dizzy, which was preferable to the emptiness I felt as Michael walked away with Thorin. When it came time to leave, I washed the bitter smell off me, ran water over the remaining cigarettes, and threw them in the trash.
I returned to DHHS and walked into the lobby. Michael was standing next to Patty, holding Thorin in his arms.
I reached out to him and asked, “Hey, Sweetie. Ready to go?”
Thorin snuggled into Michael more. I was the odd man out. I was the interloper. Thorin knew Michael longer than he knew me. I had loved Thorin for months before we had met, when he didn’t even know we existed. I was crushed and didn’t know what to do.
Michael gently pulled Thorin away from his chest, “Airplane, Dude?”
Thorin put his arms out to his sides. Michael held him lengthways from underneath and flew him toward me. Just as he would get near me, Thorin would shake his head and pull back his arms. After a long, three or four minutes, Thorin let himself fly into my arms, and we headed back to the car.
“How did it go?” I asked from the front seat as I was driving home.
Thorin stared out the window, ignoring me.
A few days after Thorin visited with his biological mother, we toured the preschool picked for us. We were completely underwhelmed when we went for a visit. It had an institutional vibe: 1960s school tile, harsh overhead lighting, and tight quarters. The classroom was a combination of gray, tan, and beige. It wasn’t One Flew Over the Cuckoo’s Nest but it didn’t scream preschool fun either. It was hard to picture Thorin, who was lively and vivacious, being happy there. I said as much to Thorin’s case manager from child services, who we met for the first time in the hallway. Kimmie looked like she was twelve years old.
“This is the best place for him,” she told me. “Trust me.”
Weren’t there enough people in our lives? Now added to the mix was a school director, a school case manager, a special education teacher, an aide, an occupational therapist, a physical therapist, and a speech therapist. A couple days before Thorin started school, Ward and I attended our first Individual Education Plan (IEP) meeting. An IEP is a legally binding document that lists the special accommodations a child with a diagnosis needs to participate in school. Later, I came to think of it as “the meeting I try not to cry at” or “the meeting I try not to lose my shit at.” IEP meetings are unnatural. The process goes against every parental instinct to shield your child from criticism, judgment, and inspection.
I didn’t know any of that, though, when we sat down with a room full of strangers for the first time to figure out what Thorin needed. After introductions were made, the case manager for the school asked each person to recommend what amount of service Thorin should receive.
“Let’s start with you,” she said, motioning to the physical therapist. “How much time for PT?”
“One hour should be good for right now,” she answered.
“Okay, speech?”
“Can you wait a sec?” I interrupted. “One hour a week for PT?”
She looked up from her note taking and smiled. “Yes.”
In unison, Ward and I said, “He can’t walk!”
“You two sure are on the same page!” she said laughing. “That’s pretty standard though.”
“Okay, what does a kid who can walk get?” I asked.
“It isn’t about him walking or not,” she said. “It doesn’t work like that.”
“How does it work then?” Ward asked.
Kimmie spoke up, “It’s great you’re advocating for Thorin but . . .”
“We want more than an hour,” I said, cutting her off. “How do we make that happen?”
This was the process for each service: they offered something, and we said it wasn’t enough. The school director attempted to lighten the tone of the meeting.
“We’re looking forward to Thorin being here with us. He’s such a charmer, and what a beautiful child.”
“I know!” I said. “I would love to get him into modeling.”
No one said anything. Complete silence. Alice suggested we move on to coordinating Thorin’s school hours with my work schedule.
The classroom teacher was the last to speak. She described the daily routine and introduced the concept of “typicals” to us.
“The typicals will see him at free play,” she said. “We’ll send a typical into the classroom as a model for him and the others. If we send more than one typical into a classroom, they tend to stick together, so it’s better to just send one.”
“What are typicals?” I asked.
There was an awkward silence.
Ward turned to me, “They’re the ones who don’t have Down syndrome.”
“Not just Down syndrome,” she said. “Any child who’s disabled.”
As we drove home after the meeting, Ward said, “Isn’t that just fucking typical?”
Laughing, I responded, “Those poor bastard typicals.”
Neither of us said anything for a few minutes.
“Is ‘disabled’ the right word?” questioned Ward.
“What about me bringing up Thorin modeling?”
Ward cracked up.
“Kari, the looks on their faces! It’s like you said, ‘I’m going to teach our dogs how to tap dance!’”
The next week, Ward met Thorin’s mother when he took him for his cardiology appointment. Thorin had two holes in his heart. This appointment was a checkup to monitor his condition.
Ward called me at work when they got back home.
“Good news! An ultrasound revealed no holes. That means both holes have closed!”
“Really?”
“Yes, really. We
